Healthcare

The Haemophilia Society receives one-year government grant

Written by Sam Wilson, February 5, 2026

We are very pleased to announce that we have accepted a grant of £846,060 from the Department of Health and Social Care (DHSC), made as a result of a recommendation by the Infected Blood Inquiry.

This one-year grant will help to fund our patient advocacy work in support of people with a bleeding disorder and their families across the UK. It will also allow us to improve and expand our support of the infected blood community.

The grant is made in response to Recommendation 10 of the Infected Blood Inquiry’s report in 2024 which highlighted the need to ensure the patient voice is heard. The inquiry recommended that our charity, along with the Hepatitis C Trust and the UK Thalassaemia Society should receive statutory funding ‘specifically for patient advocacy’.

We’re grateful to the inquiry for recognising that our charity’s important advocacy work should be supported by government funding and to DHSC for honouring the inquiry’s Recommendation 10. (see p272 – 276 of the inquiry’s report, volume 1).

Kate Burt, Chief Executive of the Haemophilia Society, said: ‘In accepting this grant we recognise our responsibility to help ensure that the varied needs, concerns and aspirations of our community are heard by the people with the power to change lives through their decision-making.

‘Through our patient advocacy, we must encourage governments, civil servants and policy-makers to embrace a culture of openness and change, placing the safety and good health of the people they serve at the heart of their work.

‘If the catastrophic mistakes of the past are to be avoided in the future, compassion and respect must be embedded into our institutions. Our work continues to help ensure the unimaginable suffering caused by the infected blood scandal results in justice for those impacted and lasting change for future generations.’

We welcome any questions regarding our plans for this grant, please send them into [email protected] and a member of the team will be in touch.

We would also like to recognise the invaluable work carried out by Haemophilia Scotland, Haemophilia NI and Haemophilia Wales as well as infected blood campaign groups, such as Tainted Blood, which are run by volunteers. Their relentless lobbying and commitment to uncovering the truth on behalf of the infected blood community has our gratitude and respect.

Your questions answered

When will the funding start and how long will it last?

The grant will be paid to THS in four quarterly instalments, with the first payment February 2026. This is a one-year grant from DHSC with a commitment to discuss providing on-going statutory funding. We will submit a business proposal for a second one-year grant for the financial year 2027/28 in June, which DHSC will respond to in autumn 2026.

Why do you need this grant?

In May 2024 the Infected Blood Inquiry recommended that the Haemophilia Society should receive state funding ‘specifically for patient advocacy’. In this recommendation, the inquiry said of THS: ‘For the future, it can continue (as it has in recent years) to realise its potential as a fully effective voice ensuring that the patient view is made known at national but also, because of its organisation, at regional levels.’

The inquiry highlighted the importance of having a patient voice that was ‘both heard and taken into account’. It identified the Haemophilia Society as one of a number of charities and campaign groups that could facilitate that.

It is no secret that THS, like most charities, is experiencing very challenging times financially. Over the last six financial years we have had to draw down over £900,000 from our reserves. Since 2019, we have allocated £1,033,000 to our infected blood support, a decision which we believe is an important investment in our community’s future.

This grant does not mean we stop fundraising or searching for more sustainable ways to safeguard our charity’s future. It does provide us with a lifeline to ensure that we can continue to work with, connect and empower everyone with a bleeding disorder in the UK.

What will you do with the grant?

The grant will be used to maintain, strengthen and expand our support and services for everyone with a bleeding disorder.

The three main areas are:

Outreach, activities and events
Advocacy, campaigns and communications
Investment in structure, including staff costs, to deliver more effective outcomes

How do we know how the money is spent?

We pledge to report back to you, our members, every four months so that you know what we’re doing. We will also do the same to officials at the DHSC to demonstrate that taxpayers’ money is being used effectively and efficiently. We have also requested an additional meeting with DHSC in April to review initial progress.

Every four months we will produce written updates and host a webinar where questions can be directed to our chief executive and chair.

Why isn’t this grant going to be used exclusively to support people infected and affected by the infected blood scandal?

The Infected Blood Inquiry was clear that our charity should receive statutory funding to support the ‘patient voice’. Much of its report focuses on the future and how to ensure that the mistakes of the past, which led to such catastrophic suffering, cannot be repeated in the future.

Our intention is to expand and improve our support for people infected and affected by the infected blood scandal, but we will also work to help ensure that future generations are supported and protected, with the safety of new treatments of paramount importance.

It is impossible to overstate the impact of the infected blood scandal on our community as a whole. We regularly support third generations of families traumatised by infected blood who struggle with navigating bleeding disorder care for a new member of the family. Even those with no family connection to infected blood are affected by the shadow of this scandal.

We believe everyone with a bleeding disorder needs to know that their voices are heard and what they say matters. It’s our job to listen and to amplify those voices to those who have the power to change lives, for better or worse, through their decision-making.

Does this grant mean you can’t criticise the government?

We will always be an independent charity and will speak out on behalf of our members on any issue of concern. This grant does not prevent us from criticising government and nor will it.

I don’t agree with the way you’re planning to use this grant. What can I do?

We understand that everyone will have their own ideas about what is an appropriate use of this money. If you have a relevant project which you think would benefit from support please let us know. If you are unhappy with our plans, please talk to us. You can contact us at [email protected] and a senior staff member will be in touch.